OMG! I have a brain tumor

[TheGh0st 9]

the stalk effect tumors aren't actually producing hormones instead they press on the "stalk" between the pituitary and the hypothalamus (sp?) which blocks the signals between the two telling the pituitary when to shut off production of things like prolactin.

One reason they think this isn't a true prolactinoma is that my prolactin is only at 40 which is barely elevated compared to normal prolactinomas which can cause prolactin levels to be up in 100's and higher.

[gweniper 0]

that makes since. basically it sounds like it causes the same things but without the elevated prolactin. no fun. sounds as you can get the breast reduction while on the 4 month trial and then find out if more surgery is needed. good luck

[KathrynH 0]

They knew this from a blood test? Wow! You have everybody's prayers here. You'll be fine!

[TheGh0st 9]

My symptoms and the bloodwork led my doctor to suspect the tumor but it was an MRI that confirmed it.

[TheGh0st 9]

Update for anyone out there.

The drug therapy appeared to be working over the last 6 months. The symptoms I had been having had gone away and I had a follow up MRI and appointment with the endocrinologist a few weeks ago expecting him to confirm the tumor was shrinking.

Unfortunately the tumor had actually grown by over 50% so I ended up having surgery 10 days later to remove the tumor.

I was in hospital for 6 days but am out now and everything appears fine. Bad headache and feel like I've got a terrible sinus cold but otherwise fine.

The sinus cold feeling comes from the fact they went through my nose to pull out the tumor.

[MacMadame 81]

The sinus cold feeling comes from the fact they went through my nose to pull out the tumor.

:ohmy: So is it all gone now?

[IndioGirl55 32]

Update for anyone out there.

The drug therapy appeared to be working over the last 6 months. The symptoms I had been having had gone away and I had a follow up MRI and appointment with the endocrinologist a few weeks ago expecting him to confirm the tumor was shrinking.

Unfortunately the tumor had actually grown by over 50% so I ended up having surgery 10 days later to remove the tumor.

I was in hospital for 6 days but am out now and everything appears fine. Bad headache and feel like I've got a terrible sinus cold but otherwise fine.

The sinus cold feeling comes from the fact they went through my nose to pull out the tumor.

Diane

Glad they got the damn thing out - and you are on the mend - 6 days in the hospital - omg - did you have complications.

Hugs GF - I hope the pain goes away soon and you are back to your spunky self..

xoxo

Janet

[heartfire 4]

Good Lord! 50% AND they took it out thru your nose!?! I'm not even sure how that is possible.

I hope your healing time is easy and quick.

What is your prognosis now? Was it encapsulated?

Best wishes for your recovery!

[TheGh0st 9]

They are pretty sure it was benign. Said if it had been cancerous the growth rate would have been more like 300% instead of 50%. It was only a little over 1cm diameter when they took it out but considering the pituitary is only the size of a pea that is still significant. They were worried when they saw how much it had grown that it needed to come out quickly before it started affecting my eyesight or worse.

I did have a minor complication. I guess the pituitary as well as the tumor rest behind the sinus cavities and a little between the two halves of the brain but without actually being inside the meninges (or sack that covers the brain). The tumor had pushed the pituitary up against the meninges in such a way that when they removed the tumor the pituitary "stuck" to the meninges and tore it just a little when it dropped back down into the position where the tumor had been. This caused a very slight leak of cerebral spinal fluids (CSF). In order to allow the tear to heal they placed a drain in my spine to reduce the volume of CSF fluids in my skull. They compared it to a leak in a Water balloon. They wanted to reduce the pressure enough that the fluids would stop leaking out of the tear and allow the edges to heal back together.

Today has been the best day so far since the operation. I'm finally able to breathe through one nostril and can close my mouth. I've had to breathe solely through my mouth for so long now that I actually managed to chap and crack the INSIDE of my lips (OUCH!) and the taste buds on the tip of my poor tongue are absolutely raw from getting so dried out when I sleep.

[TheGh0st 9]

Had two nasty events in the hospital. I actually considered starting a separate rant over.

Overall the staff was great but these two things really put a bad cloud over the experience.

The first happened 2 days after surgery while I was still in the Neurosurgery ICU unit. There is suppose to be a max of 2 patients for every nurse and the rooms are designed so that the nurse has a desk sitting in a little alcove that has windows looking into both room. And most nights I was there my nurse said I was here only patient.

But on this day something went wrong. I finally needed to have my first bowel movement, but was still unable to get out of bed per doctors orders. I had a catheter for other necessities but needed to use a bed pan for the bowel movement. Not exactly something I was looking forward to. I'd already tried once before to no avail with the nurses' assistance but my body was rebelling against the idea of going while lying flat on my back. This time the urge was too great so I managed to place the bed pan beneath on my own and after going I rang the nurses bell for assistance. Only NO ONE CAME!!!

Here I was sitting in my own POO and no one was responding to my calls. I was mortified. I waited and waited. There wasn't any way to re-ring the bell once it was lit. I debated pulling some of the leads from my heart monitor but didn't want doctors rushing in thinking I was coding just to find me sitting in my own waste. The longer I waited the more humiliated I felt. Plus I couldn't help thinking what if I was in real trouble why weren't they coming to my aide?

Finally as a last resort I called the hospital's main line from my cell phone and calmly requested to be transferred to the ICU's nurses station without telling them who I was. Once I finally got someone on the line I told them I was a patient down the hall and would someone please respond to my call for help from over 30 minutes ago.

Even so it took nearly 5 minutes for someone to walk down the hall and come in. I even heard them talking outside my room for a couple minutes. The final straw was when instead of my own nurse coming in it was some male resident. At point I finally broke down. When he asked what I needed I lost it mumbling something about how I hadn't wanted him or any other guy to resond then broke out in tears.

When my nurse came in she was very apologetic. Said it was some mix up with her lunch break and the nurse that was trying to cover both sets of rooms not noticing my light. But the damage was already done. I was both humiliated for having to sit like that for so long as well as feeling I had now labeled myself a "problem" patient for having got them in trouble with there supervisors.

[TheGh0st 9]

OK the one I just put up was probably the worst of the two events but this one actually pissed me off much more. In fact I'm seriously considering trying to file some sort of complaint over this one.

On my last day I still had the drain in my back even though it had been clamped off for the last 48 hours. They told me around 7am they were going to remove it in a little while and I'd be ready to leave later that morning.

I asked if they minded if I stayed until 3-ish as my husband was at work. I also said that would give me time to get a shower there at the hospital where they had a chair in the shower and assistance if needed. They said that was no problem.

But then I waited and waited and no one came to remove the drain until 1:30pm. The day before they had removed the catheter and I had been able to get up on my own to go to the restroom for both necessities (with IV's and Brain juice bag in tow but still on my own with NO MORE BEDPANS). When the intern came in I was just getting up to go to the restroom again. I told him I'd only be a moment but he insisted I lay back down. He said it would only take 2 minutes to get the drain out then I could go.

Having never had a spinal drain before I had no idea what to expect so I said fine and laid back down. First he informs me that after removing the drain he will have to put in a couple of stitches and that it will have to be done without the aide of any anethsetic (topical or otherwise) as it would affect the use of my legs. And actually the stitches didn't hurt too bad. They hurt mind you but not unbearably. Then he said he was going to have to tie off the stitches and that doing so would hurt a bit more. At which point he proceded to grab both ends and yank them together into a knot. It hurt so bad I screamed before I could catch myself then called him some choice names.

Still this isn't the worst part. Afterwards I'm lying there licking my wounds and teasing him that I thought he enjoyed hurting me a bit too much. He joked back that I wasn't the first to suggest that. Then proceded to tell me I needed to remain flat on my back for the next TWO HOURS before I could move again.

I was like WTF!@!! 2 HOURS!?? Don't you remember I said I had to go to the bathroom just a couple minutes ago?

What was his response?

That's alright I'll just have the nurse give you a BEDPAN

I was like bedpan my @$$! I could have gone on my own two feet a couple minutes ago what is this about a BEDPAN!

I was even more livid when I asked why couldn't you have waited just one minute for me to go to the restroom before hand and saved me the indignity of needing assistance with a bedpan? His response was some lame comment about how the doctor had wanted out right then. Excuse me? what is the difference of a few seconds, not to mention he had to leave the room to find supplies. If I'd known he was going to leave me bedridden before hand I would have insisted on going.

I complained to the nurse about him afterwards and she whispered to me that he was an @$$ and that none of the nurses liked working with him.

[heartfire 4]

Oh jeeze, you've been thru the wringer!

How do they know the meninges is healed? Is it the lack of excess Fluid that tells them? Is the pituitary gland compromised now or will it go back to normal? What about your sinus passages? Will you be able to breathe normally again or is this just from surgery?

Sorry for all of the questions.

I so can't imagine cracking the INSIDE of my lips. I have enough problems right now with the OUTSIDE! (I have a bad cold and I'm not drinking enough.)

I would have been sobbing by the time someone got to me. I don't want you to even worry about what they think of you now. They messed up and should get in trouble!

Take care of yourself.

[Kat817 19]

I hear ya! My DD is in the hospital now, and a couple of days ago I had it out with one of her Dr.'s.

She was admitted with MRSA infection in her neck and outer ear. So she is being seen by a Communicable Diseases Dr. while she is in. There is a HUGE sign on her door that states WASH IN/ WASH OUT. So we do. We scrub going in and out. We take my granddaughter to see her Mommy and we scrub her hands, as we sing Happy Birthday 2 times, teaching her how long to wash.

So in comes this CD Dr. she does not wash in, she examines my DD's wound, actually touching the ear, and she says she is going to go look at the CT with contrast scans and see how they look. And she walks out--without washing! I headed out right after her....and she would not even stop and talk to me, she kept walking. I told her we had been really following the Wash in and out thing, because there was a child in there we wanted to keep well, and that to touch her without washing was not acceptable, and to then touch the door knob---we might as well all be handling her ear. The moronic Dr. says to me "a hospital is not an ideal place for a child". Well no sh*t, but neither is keeping a 4 year old away from her Mommy for a week! She sat right down and began typing away on the computer! So all of us in the room were exposed to those germs on the door, and then all the nurses on the computer!

I did file a complaint for all the good it will do. I told them in the complaint, that possibly since she is a Communicable Diseases Dr, she was just practicing job security!

As it is we can barely understand her, there is a serious language barrier, but to not wash---I will not accept that!

I think you should file a greivance on both counts. They will only improve if pushed I believe!

Glad you are on the mend!!

Kat

[TheGh0st 9]

Oh jeeze, you've been thru the wringer!

How do they know the meninges is healed? Is it the lack of excess Fluid that tells them? Is the pituitary gland compromised now or will it go back to normal? What about your sinus passages? Will you be able to breathe normally again or is this just from surgery?

Sorry for all of the questions.

I so can't imagine cracking the INSIDE of my lips. I have enough problems right now with the OUTSIDE! (I have a bad cold and I'm not drinking enough.)

I would have been sobbing by the time someone got to me. I don't want you to even worry about what they think of you now. They messed up and should get in trouble!

Take care of yourself.

When the Fluid was leaking out it actually drained into my sinuses, out my nose and down my throat. Tasted salty. *Yuck* so when drainage stopped they knew it was healed, but they left it in for a couple extra days for good measure. I will also need to follow up with the endocrinologist for several months to confirm the pituitary is still functioning properly. Even things that were working before could in theory be damaged now due to all the poking and prodding. I'll also have to have follow up MRI's every 6 months for the next several years.

So frustrating. My husband is the one always whining about some health complaint and running to the doc 2-3 times a month for one reason or the other. I go 2-3 times per year max many years only once. But somehow I've managed to rack up 5 surgeries in our 16 years of marriage. I told him next time is his turn. But then again I'd love to have a breast reduction sometime down the road.

[MacMadame 81]

I told him next time is his turn. But then again I'd love to have a breast reduction sometime down the road.

:frown:

Me too. On both points!